We don't have a nurse Friday night, Saturday night, Sunday day. Thankfully our incredibly awesome nurse & friend from the ICU is working Sunday (she reads this blog hee-hee) and Monday night I had to beg our nursing agency to put our night nurse on an extra night. Thank goodness because we found out today that we have to be at Children's at 6 am on Monday morning. Which means we have to leave at 5am, which means we have to be up around 4am. ;) So much for sleep this weekend. This is one of the major reasons we need Ava decannulated sooner rather than later. We can actually sleep at night! Maybe it wouldn't be sound because I would still have a pulsox hooked up to her for a while, but with our lack of nursing for almost a year now, not to mention the agency being rather rude almost daily, it would bring great pleasure to eliminate that huge problem. I should calculate how much time I spend on the phone with them in a week. Maybe I really wouldn't want to know. lol.
I'm a little nervous about the bronch at the hospital, being that the hospital is still busy, and I really don't want Ava to get sick. Please pray that everything goes well and we can find out her trachea looks great to go ahead with decannulation in the next few months. I will probably drive all the nurses/docs crazy making sure their hands are clean. But it would be worse if we were back there. Then I really would be sanitizing everyone and thing...
Ava is doing really well with her orthotics and sneakers. She's getting very close to standing by herself. She is also eating a whole organic pack of food at one feeding time. We are also going to go to GI in Syracuse and their feeding clinic in May to maybe see if they have any more advice about getting her past the texture of solids and not gagging.
Thanking God for Ava's bronch on Monday and praying that she is safe and we have great news...
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